- Fibro Action and FMA UK are now Fibromyalgia Action UK
- Welcome to FMA UK
My name is Louise Maule and I am a fibromyalgia sufferer. It took 5 years for the diagnosis with a range of tests and different diets to try to see if it eased my symptoms. Every day is different and if I get flare ups it can completely take me off of my feet, looking after two young children daily it can be a struggle, I want to be able to be the mum I want to be and not have to say no to them as I'm not feeling well enough to play a game with them or run around the park.
I have now had fibromyalgia for 8 years and have learnt what triggers my fibromyalgia so I'm able to minimise flare ups as much as possible. Because of the length of time it took for diagnosis and because there is no treatment available I decided to make it my mission to raise as much funds as possible to aid Fibromyalgia Action UK in their research and support.
On the 11th May 2016 a Fibromyalgia Awareness event took place in the House of Commons, hosted by Andrea Jenkyns MP, organised by Fibromyalgia Action UK (FMA UK).
The event was well attended by MPs, researchers, healthcare professionals, students and people living with fibromyalgia, their families and carers. There could be some thrilling outcomes of this event resulting in greater collaboration between different stakeholders in the fibromyalgia field: patient organisations, healthcare professionals, researchers and policy makers. During the event Dr Toby Garrood, a consultant from Guy’s Hospital fibromyalgia clinic gave an overview of the award-winning and best-practice fibromyalgia multidisciplinary service, which can act as a role model to be replicated easily and at a low-cost in rheumatology departments of hospitals across the country. FMA UK will look intot how to facilitate the spreading of the knowledge about this service to relevant healthcare providers, Clinical Commissioning Groups, NHS England and the NHS in devolved nations.
You will be interested to learn about an early day motion at Westminster on chronic pain. So far 14 MPs from across the UK have signed up – the more that sign up, the more coverage the EDM is likely to get and the more MPs are likely to have Chronic Pain raised to the forefront of their minds. Some of the points raised by the EDM are that the 20 per cent, or 1 in 5, of the European population has chronic pain and that 1 in 20 of our population live with severe pain with a quarter of these in severe, intense and highly disabling chronic pain. It explains that there are an estimated 4.6 million GP appointments per year for chronic pain in the UK costing £69 million, which equates to 793 full-time GPs because chronic pain sufferers attend their GP five times more frequently than those without. It notes that the overall quality of life in the presence of chronic pain is shown to very low and all dimensions of health, including physical, psychological and social are shown to be severely reduced with a 10 year mortality, higher among those with severe chronic pain, particularly death from heart of respiratory disease which is twice the rate of those without severe chronic pain. Click here for the page showing the full text of this EDM http://www.parliament.uk/edm/2016-17/195 And to send an email to your MP, click here http://www.parliament.uk/mps-lords-and-offices/mps/ and ask them to sign up to “Early day motion 195”
The project is organised by The University of Manchester and Central Manchester NHS Foundation Trust. It is a new public engagement project in collaboration with NIHR Manchester Musculoskeletal Biomedical Research Unit called Design for MSK.
It aims to raise awareness of musculoskeletal (MSK) conditions like fibromyalgia in younger people by inviting those aged 16-26 to share their experiences of living with their condition using the #DesignforMSK hashtag on social media. Contributions will then be used to inspire a group of young patients and product design students in Manchester who will work to create solutions to issues identified by patients. Both the final products/prototypes and the process will be exhibited in Manchester during November 2016.
Tim Daniel from Highbridge is going to face his demons of heights to do a 15,000 ft skydive on Saturday 20th August to raise awareness for the invisible illness FIBROMYALGIA & Myalgic Encepholomyelitis (M .E).
Tim’s Mum, Sally has fibromyalgia and helps run a local support group based in Burnham-On-Sea. Fibromyalgia HEART of Somerset Support Group who meet every Monday at the Somerset Skills and Learning Centre, (the mobile unit at the back), Princess Street, Burnham On Sea from 1.30 – 3.30pm. The group is affiliated with Fibromyalgia Action UK (FMA UK), a national Fibromyalgia charity.
The jump will help raise funds for Fibromyalgia HEART of Somerset and FMA UK. FMA UK not only provide support to sufferers and their families, offer medical information to professionals but they also aim to encourage funding for new research projects, due to little research being carried out in the UK.
If you would like to sponsor Tim then you can do so by visiting http://www.skydiveukltd.com/skydive/charity/sponsor-a-friend/profile/?id=43
HealthUnlocked Online Community Volunteer Admin role description
FMA UK is a small national charity committed to supporting people affected by fibromyalgia. Fibromyalgia is a widespread chronic pain condition for which there is no cure and no designated treatment in the UK. Fibromyalgia is a common condition: there are up to 2.7 million, or one in 24 people, fibromyalgia sufferers in the UK.
FMA UK’s work can be divided into three key areas:
- Providing evidence - based, up to date and accurate information about fibromyalgia, diagnosis, treatment, care and other support under the Department’s of Health Information Standard quality mark.
- Peer to peer support: we provide an online community forum which offers peer to peer support, information, advice and signposting where people affected by fibromyalgia share their experience and provide informal support. Over 9,000 members use this tool to help them cope with the condition
- Providing two Helplines, information, signposting and support by telephone and email by our dedicated volunteers.
About Our Health Unlocked online community
Health Unlocked is FMA UK online Community Forum, where people can get support and information 24 hours a day, 7 days a week. Volunteer Admins support provides a welcoming environment for people affected by fibromyalgia. Volunteer Admins enable us to provide a better, more responsive service.
This role can be based anywhere in the UK, from home, and undertaken when it is convenient to the volunteer. No fixed time commitment is needed, however we will ask you to login and respond to tasks regularly.